Cold Caps Users Past and Present, to Save Hair
Comments
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Hello NewportLori!
Long time since I talked to you! My hair felt dry and lifeless also for a few weeks. I started taking Silica Compound tablets. You can get them at a health food store. They are great for your hair and nails. My hair bounced back to normal in no time. Not sure if it was just a little time or the Silica but my hair got back to normal quickly. Frank Fronda told me about them. good Luck! Geralyn
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Hello Colleen,
Be careful about putting anything close to your scalp-it will get into your roots-especially during your treatments and 3 weeks out. Don't forget that all these different ingredients in hair products can react to the residue of chemo in your hair follicles. Also conditioners can clog them up making it very hard to excrete. If you have to do anything and can't wait try to stay at the ends of your hair.
Just some friendly advice-everyone is different! Geralyn
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Geralyn - thanks for the advice. It makes sense. While I had been using the conditioner on the ends, I know last week my scalp also got rinsed. I'll be much more careful.
It is Day 15 and the non-scalp shedding has started a little. My scalp "might" be shedding (?), but I tend to shed alot and since I have not been washing my hair as often and not combing it as much, I think much of the hair is just the normal shedding -- at least that is what I am telling myself.
Colleen
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well, 5 days out since my # 3 AC i have hair still but shedding a lot, im still worried, i have one more AC on the 30, my friends say they cant tell but i can, plus it is all frizzie so you cant tell as much, nobody is used to seeing my hair like that..lol ill be starting Taxol soon 4 tx every 3 weeks, is that easier ion the hair then AC? i hope everyone is well, ive some bad days of fatigue and have not the energy to type..lol, love to all
Chey
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Hi,
It is Day 16 from treament 1, and as much as I wanted to consider this "normal" shedding -- it isn't. Everytime I move my ponytail, I have 6-12 strands of hair in my hand. And since Chey said she is still shedding I guess I had better get used to this. I need wash my hair this weekend (3 days out from next chemo on Tuesday). This washing is going to make me nervous.
Colleen
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I had lots of shedding after my first treatment, then it seemed to level off after Treatments 2 and 3. I am in the danger zone for treatment 4 and seem to be shedding a lot again. But, my hair was so dry I used a little conditioner this week and am pretty sure I got it on my scalp as I wasn't being as careful since I am so close to being done. Anyway, it was my last treatment and although I notice the shedding, I don't think you can tell anything by looking at me. My hair doesn't look any thinner and I have not had any clumps or bald spots; just finding more hairs in my comb and on my clothes. I am counting down til next Friday which will be 21 days post last chemo and hopefully the end of the danger zone! Good luck Colleen, Chey and everyone else. I have to say I'm thrilled with my results, but I did TC which I know is not as tough on the hair as ACT. Fingers crossed for good results for all! xoxox GG
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Hi all: I'm 4 weeks past my last treatment #4 TC and still had shedding until a couple of days ago, but it has definitely tapered off. You can't tell at all that I've just completed a full course of chemo. I still get stray hairs on my clothes and seem to constantly be picking them off, but nothing like before. When I wash and/or comb my hair, there is noticeably less hair than during chemo (in my non-chemo life I was a heavy shedder). Treatment #4 is when my arm hair finally left -- it was the last body hair I had! I now have fuzzy peach arms and am happy to report that other body hairs are starting to return, and I can see a couple of eyebrow sprouts to join the few that are hanging on. I feel I've turned the corner on hair loss. I just trimmed my dry ends the other night, and my hair looks great for the first time in a couple of months. Isn't it amazing to emerge from chemo needing a haircut!?!
I used conditioner throughout my treatment; I had no ill effects from this and my hair stayed relatively soft. Fwiw,I used Trader Joe's Spa nourishing shampoo and conditioner, same that I always use. It's gentle, inexpensive, and keeps my hair soft and clean when swimming ... or going through chemo!
I seem to get a new call or email from a potential user, either through Frank or through word-of-mouth in my own circle, and am having a little difficulty keeping up with it! I think I need to write up an FAQ and just email it to save myself time, though I know people want to talk through it also. Has anybody else written up anything like that? Just curious. It'd be great to have one collective document -- dry ice methods, hair care, other tips etc.
Everybody here is a pioneer in this!
Cheers,
Susan
p.s. My first week of rads went very smoothly and I love my care team there!
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is Taxol easier on the hair then AC or TC ill still have 4 treatments of that to do??? after my last AC on friday the 30th
love to all,Chey
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Ang - what did you decide to do with your hair colorwise. I remember you had just wrapped up your chemo when I started with the caps and you were such an inspiration. Now it looks like your 'generation' are going to be the pioneers of hair color. Re: crying...sounds like your hormones have taken a hit. Sending you a (((((hug))))!
Geralyn - I just ordered the Silica as my hair is really dry. I hope this helps me like it helped you. Thanks for the advice.
Cheyenna - can't believe you'll be finishing up AC this week! So exciting. I don't have personal experience but I know my friend Jane with did DD AC followed by taxol said that her hair started to grow back while on the taxol. Still, I think everyone is different. I'm hoping that you do as well on the T as you are doing on the AC.
Susan - "It's gentle, inexpensive, and keeps my hair soft and clean when swimming ... or going through chemo!" This really cracked me up. I read it as if you were doing an infomercial and going through chemo was just a normal every day activity!!! With regard to a list, I started to put one together for my chemo experience. I listed every side effect I could think of and what I tried to do to combat it. Now I need to put an info sheet together for the caps because I do get questions now and then.
Colleen - are you okay? I am really hoping the shedding has kept to a minimum!
I am happy to report that my caps now reside with a new user - someone who heard about the caps through Shadow. I got my caps from Shadow. This woman is so lovely. She came to my house to pick up the caps and I tried to give her all the advice I could think of. I think she must have been encouraged to see my full head of hair - dry as it may be.
As for my hair situation, it continues to shed lightly. The individual strands that come out look pretty thin but on my head the hair looks fine. Washing it is a huge chore now because I have to spend at least 20 min. painting in the all the gray roots. I'm only 1-1/2 weeks out of my last chemo so it's too early for coloring but I'm going to start doing research and talking to professionals about what I can do in the near future. The woman from Rapunzel didn't really have any advice for me and I haven't heard back from Frank yet on post chemo hair handling.
I really have to echo everything that GolferGirl has said about her hair situaiton. I also did the same thing with the conditioner. But even if I keep it away from my scalp more hair comes out while I'm conditioning it. It's so funny the way that works. I haven't hit my last danger zone yet. For me I feel like it starts on day 21 and lasts about a week. I'll let you all know how it turns out in about 2-1/2 weeks but I'm hopefully that if I'm made it this far I will be just fine.
Definitely good luck to all the newcomers.
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Thanks Drim~
Your words are warm and fuzzy. Every lady on here is an inspiration...
I ended up just coloring my hair, no highlights yet.
My hairdresser said she would wait if she were me. I had heard a story of someone who had her hair come out after chemo when she did highlights so I did not want to take any chances.
It is still very dry but at least it is all one color now...
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Drim- well it is Day 19 or 20 (depending on what counts as Day 1). I washed my hair successfully, but was stumped about how to comb it out without having conditioner on it. A wide tooth comb was having problems getting through the hair and I didn't want to pull too hard. I finally decided to put a little diluted conditioner in the palm of my hands and just touch it to the tangled area. That worked fine. No conditioner on my scalp. But sheesh I had LOTS of hair comb out. I keep telling myself that before chemo I washed my hair several times a week so there was never this much "old" hair on my head at one time. No one who sees me ever thinks I am going through chemo. I still have relatively thick, shoulder length blond hair (with some pretty serious gray roots developing!).
I do pre-chemo day steroids tomorrow; along with getting my dry ice delivery. Tuesday is Chemo #2!
Colleen
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Good luck tomorrow Colleen!! I still feel like I don't want to comb my hair because too much comes out. My hair is wavy/curly so I don't ever comb it when it's dry and sometimes I don't even comb it when it's wet so I know how you feel. Welcome to the gray club. It's so not fun :-(0
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Day #46, hair still hanging in there. The frostbitten spot is thinner, but even before chemo #2, the tiny hairs were starting to grow in.
We've changed my chemo regimen: dropping the cytoxan and upping the taxotere to 100mg/m2 instead of the usual 75mg/m2. I'm hoping the cold caps will be as effective for the higher dose. Round number #3 on Thursday.
Colleen, I'll be rooting for you tomorrow!
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Bummer, my message didn't go through! Trying again. Ordinarymamal, my taxotere is 100 mg and I seem to have made it to the magical day 21.
Thanks to all for the good wishes for tomorrow.
Colleen
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Hello Drim,
When and if you put that FAQ sheet together could you email it to me? It would be so helpful. I have lots of info but I need it all in one place! We should just keep reposting it on this thread!
Thanks,
Geralyn
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Hi, I don't have BC, but my best friend was just diagnosed. She is beginning chemo on Aug. 9th, and when I found out about the cold caps I was excited for her and told her about it. She told her doctor's office, and they told her that they had already had women having the same chemo as her who tried it, but lost their hair anyway. The chemo she is having is Adriamycin/Cytoxan (AC) every 3 weeks for 4 times, followed by Taxol.
I spoke with the inventor of the cold caps, and he said they should work with this kind of chemo. Can anyone who is on this protocol and tried the cold caps let me know of their experience?
Thanks for you help!
My friend Dx 7/13/10 IDC, 2cm, stage 2, grade 2, ER+/PR+ Her2-
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Melindam2 im on AC 4 every two weeks, and have a full head of hair still, i have my last AC on this friday, i have thinned a lo,t 25% about but know one can really tell but me, its a lot of work but is has been working for me and a few others on AC. 0
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Does anyone have any advice on exercise while going thru chemo and using the Penguin cold caps? I presently run a 5k every morning at around 430 am in Texas. We average around 85 degrees at this time of the morning. I asked Frank and he was not sure about precautions to take. Did not know if I should wet my hair with cold water prior to running, ect.... I will be starting a 4 cycle of Taxotere and Carbo on 10 August 2010 every 3 weeks followed by numerous weeks of whole breast rads. I would appreciate any insight from ladies doing this regimen, exercise buffs, ect.... Thanks tons and I have truly appreciated the information I have read in regards to the cold caps. Cold cap therapy is not used in my cancer clinic and they do not support it.
Lacy
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cancer2010: I exercised like crazy throughout my TCx4@3 treatment; it was a fantastic way to detox, to keep in shape, and to keep my spirits up and my life as "normal" as could be possible. You are running when it is cooler in the day, which is good; I think keeping your scalp as cool as you can (maybe using a cap straight from the freezer to cool down your scalp after a run) would be beneficial. When I swam, I wet my hair (cold water) before putting the swim cap on, then rinsed thoroughly in cold water after the swim. Am still doing this, in fact, though I'm in my 5th week out from having completed chemo. I hiked, biked, lifted weights, swam, did Qi Jong, and am taking up golf lessons next week. Am still shedding 5 weeks post-treatment; in fact lost a bit today while washing my hair, but nothing like when I was in the midst of chemo. The follicles do take a hit and it takes a while to recover I guess.
Btw, I was the first at my cancer center to use the caps -- they did not have them there, nor a freezer, so I had to do the dry ice dance :-) -- and initially staff were anywhere from tolerant to not supportive, but they are all believers now. I think they should support you no matter what beliefs or systems you include in your cancer journey, whether it's your faith, your diet, clicking your heels three times, or use of PCCs. (Years ago there were some gel-filled caps but they had only about a 30% success rate. I found many of the older oncologists and onc nurses remember that era, but it is NOT the same as Penguin Cold Caps.) Many of the folks on this group have been in the same situation, pioneering the use of the caps at their centers, and it is fun to go back for treatments week after week still with your hair. Not to mention going through treatment looking like you, not like a cancer patient.
You will do great! Just follow the protocols, drink tons and tons of water (even before chemo starts to get your liver ready), and stop using deodorant with aluminum right away (now) because the aluminum acts as a bonding agent and can actually trap chemo at the follicle.
I'm in week #2 of whole breast rads and have been able to continue all of my activities, btw.
Susan
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sebm9,
Thank you tons for your wealth of information on the exercising and cold cap use. I will be sure and log my experiences in hopes of helping others as I go along. I know this is not the thread for discussing chemo tx but my email is captllgen@aol.com and I would like to ask you about your 4 cycles of carbo/taxotere if you get a minute. Muchas Gracias and I am in hopes everyone out there has a super day!!!
Lacy
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omg!!!!! my ONC told me yesterday " im impressed with your hair" holly crap!! i made her repeat it!! lol. OK i have a lot of thinning and am worried? i have my last AC on friday then i get 3 weeks off and then 12 once a week of Taxol, will my hair stand up to it??? im so worried. i think taxol is easier on hair then AC? any thoughts??? cant seem to get a hold of frank, i think ill call him today..
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Lacy - I didn't to carbo. I did taxotere/cytoxan, and I believe that's what sebm9 did as well. I posted my experience/advice on that treatment in a thread called 'Starting Chemo this Friday-Any tips please'. I think there are probably things that carry over so hopefully that will help you somewhat. I'm doing the H as well and am having no problems with that at all.
cheyenna - congrats on being almost done with AC!! I think if you are doing the Taxol weekly your hair will have a much easier time with it than on the AC. GAgirl is doing weekly Taxol and it sounds like she is doing great on it.
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Hi ladies,
I just finished 6 rounds of TC and I gladly report that I still have a full head of hair. While I did thin, I don't think anyone can tell. I know to expect some more shedding for a couple of weeks, but at this point, I think I can safely say the caps worked.
Cheyenna, I too was worried I wouldn't make it. I had A LOT of shedding (just yesterday I pulled out 30 strands at one time) and my chemo went on for 5 months, and I wasn't sure my hair could withstand all this. But it did. What I also realized was that I had a lot of hair to begin with, so a lot came out... but a lot stayed on as well.
To all those wondering whether the caps are worth all the work (they are a lot of work!), they are sooo worth it! Everywhere I go people can't believe I have cancer and am doing chemo. Its done wonders for morale and I think that's half the battle anyways.
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Hey bridetobe~
Congrats on finishing chemo! I agree with you so much on the morale issue.
Everything was so much better with a head of hair...
I know I felt better as a person when I was not looking "sick."
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bridetobe Congratulations on finishing!
The caps really are a hassle, aren't they, but SO worth it! I love just walking out the door, without having to mess around with "the issue," of hats, wigs, scarves, or going uncovered. It might seem trivial to non-cancer outsiders, but the small bit of normalcy having hair gives us--when so much else is uncertain and crazy and sick--is priceless.
Had taxotere, treatment #3 yesterday, with my coldcapping team heroically doing our standard 14 cap changes. When we left the clinic, the traffic was bad, and had to do a roadside cap change. I am wondering how the folks who have a freezer at their clinic work out the post-infusion caps. Stick around at the infusion center for four extra hours? Have some caps on dry ice at home?
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bridetobe Congratulations on finishing!
The caps really are a hassle, aren't they, but SO worth it! I love just walking out the door, without having to attend to the "issue" of hats, wigs, scarves, or brave it uncovered, etc. It might seem like a relatively small issue, but all the issues add up, and can become a barrier to activity, and exercise, and pushing through the fatigue to get out there and live life.
Had taxotere, treatment #3 yesterday, with my coldcapping team heroically doing our standard 14 cap changes. When we left the clinic, the traffic was bad, and we had to do a roadside cap change. I am wondering how the folks who have a freezer at their clinic work out the post-infusion caps. Stick around at the infusion center for four extra hours? Have some caps on dry ice in the car to do the rest at home?
Here's to happy hair days to us all!
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bridetobe Congratulations on finishing!
The caps really are a hassle, aren't they, but SO worth it! I love just walking out the door, without having to attend to the "issue" of hats, wigs, scarves, or brave it uncovered, etc. It might seem like a relatively small issue, but all the issues add up, and can become a barrier to activity, and exercise, and pushing through the fatigue to get out there and live life.
Had taxotere, treatment #3 yesterday, with my coldcapping team heroically doing our standard 14 cap changes. When we left the clinic, the traffic was bad, and we had to do a roadside cap change. I am wondering how the folks who have a freezer at their clinic work out the post-infusion caps. Stick around at the infusion center for four extra hours? Have some caps on dry ice in the car to do the rest at home?
Here's to happy hair days to us all!
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Bridetobe and Cheyenna - Congrats on finishing!
Ordinarymammal- I had the freezers at my center and just stuck around after treatment. It wasn't bad, my sisters (who were my crew) and I had a nice time catching up at each treatment.
Today is the magical day 21 post-last chemo for me. Yay! And I have a full head of hair. In fact, today I saw my onc for my post chemo follow-up. My onc did the clinical trial for the caps and he has seen a lot of users and he said my hair held up with the best of them! He thought it looked great and was impressed I didn't have any bald spots or noticebable thinning. He started moving my hair around and he's like "Wow, you didn't lose anything!" It's funny because there were days I felt I shed a lot, but I guess I really was the only one who noticed! Yay! Thank you PCC's!!!!
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I found another manufacturer for a cold cap. Google; Elasto Gel Hypthermia Helmet for Chemotherapy treatment. Cost is $90/cap. They are a soft gel bonnet that fit really well.They shipped in 2 days from MandW Supply, Inc in Mission Kansas. I go in Tuesday, August 3 for my first of 4X of Taxotere and Cytoxan. I'll let you know how it goes.
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I found another manufacturer for a cold cap. Google; Elasto Gel Hypthermia Helmet for Chemotherapy treatment. Cost is $90/cap. They are a soft gel bonnet that fit really well.They shipped in 2 days from MandW Supply, Inc in Mission Kansas. I go in Tuesday, August 3 for my first of 4X of Taxotere and Cytoxan. I'll let you know how it goes.
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